Dark Humor in Dark Times

Timshel

As is generally the case with pretty much all popular stuff, I got on the Mumford & Sons bandwagon a little late. What can I say? I’m not exactly a music tastemaker. Speaking of which, have you heard of this “Beyonce” woman? She’s quite something!

In January, when J was put on the oscillator, my sister E took a leave from her little old job as a doctor and flew across the country to us. (I didn’t know then, but know all too well now: there is a very thin line between the oscillator and calling the funeral director.)

E never got to hold J when she was here in January. This pic from April was hard-fought.

E jumped into the rotation for overnight stays at the hospital beside J’s bed. She introduced us to the world of ICU, explaining what was normal and what needed push back. She drank wine with me, she slept beside me on my nights at home, and she held me when I cried — back when I still did that. (Crying, not wine drinking. Obviously I still drink wine.)

Before E left, she gave me some recommendations for new music to listen to, as I suddenly found myself spending a lot of time driving to and from the hospital and sitting alone in said hospital. The Mumford & Sons album, Sigh No More, was on the list. I got to Track 8 for the first time on my way to the hospital for a night shift, and became so distraught I actually had to pull over. I think the lyrics bear repeating here:

And death is at your doorstep
And it will steal your innocence
But it will not steal your substance (Yep)

But you are not alone in this
And you are not alone in this
As brothers we will stand and we’ll hold your hand
Hold your hand
(Well, I actually have a brother and four sisters, but point taken)

And you are the mother
The mother of your baby child
The one to whom you gave life
(I mean, COME ON?! I almost got in a car accident at this point)

And you have your choices
And these are what make man great
His ladder to the stars

But you are not alone in this
And you are not alone in this
As brothers we will stand and we’ll hold your hand
Hold your hand

And I will tell the night
Whisper, “Lose your sight”
But I can’t move the mountains for you

It still chokes me up. First, because it rings so bizarrely true. But more importantly, because as much as ICU Dad and I have slogged through this nightmare together, we were also carried through by those we love — and this song somehow captures it all.

We needed support badly, but neither ICU Dad or I are the types to recognize this and act on it — we tend to be pretty self-reliant folk. We were determined that James would have someone from our family with him as close to 24/7 as possible. This was, with another child at home and only one parent on leave from work, rather a logistical nightmare. In hindsight, it would never have been possible without help.

Before E left in January, she got in touch with my stepmom and my other sisters and explained the seriousness of the situation. Apparently I had not really communicated this to anyone. Given I started this blog about 6 months after J was admitted to the hospital, I agree that is unsurprising.

Julia Roberts = my stepmom. Come to think of it, their laughs are a little similar.

They organized themselves so that we had one of them here with us continuously…for over three months. First up was my stepmom. If you don’t know us, I can guess what you’re thinking. Stepmom? Who wants a stepmom around? I DO. My stepmom is…amazing. The best. Remember the aptly-named movie Stepmom with Julia Roberts and Susan Sarandon? Change the number of kids to three, then add three more and it is eerily close to the story of our lives. Yep, she and I had a bumpy start like any stepmom-stepdaughter. Now, I love her like my own mother. She stood vigil beside James, took Max on all kinds of weird and awesome adventures, cooked, supported. Like only a mom could.

Once she left, my other sisters stepped in. My sisters and I have always been close, but after this experience…they are really just everything to us. My sister S is a free and easy university student in her early twenties; the night she arrived to help (after a 30-hour set of flights, mind you), it happened that neither ICU Dad or I could get home in time to get Max. Without a second thought, she picked him up, bathed him, read to him and put him to bed. He was happy as a clam when we arrived home, nonplussed that an Aunt he hadn’t seen in 6 months just showed up at his house and took over. She ran our household for almost three weeks. She held my hand on the day J had to be emergency re-intubated — awake. There is NO WAY I was that responsible and generally awesome at that age.

ROAR.

Sister H has the dubious distinction of being the only person who can rival the amount of time ICU Dad and I have spent in the hospital with James. She arrived for a two week stay, took one look at me, and changed her flights. She also called in her partner, who rose to the occasion admirably. I feel guilty that his first ever baby experience was in a PICU, though I suppose when they have a baby of their own it will feel like a cakewalk in comparison.

In total, H spent five weeks with us, supporting this family in her quiet, ferocious way. She pulled 36 hour shifts with James in the hospital alongside me. When I was breaking down, she held me together by the force of her will … and her “sister arm clasp”, invented to deal with an ICU Mom who stopped letting people touch her for a while there. People often tell me how strong I am: H is a lion.

Constant through all of this were ICU Dad’s mom and dad. Their lives were turned upside down when they became our home base near the hospital, helping us take care of Max, preparing meals for dinner breaks, and doing a LOT of laundry. As time wore on, and ICU Dad and I wore down, they stepped in on more and more hospital shifts. I can pretty confidently say that James was the only kid at rehab whose grandfather suffered through the nights on the couch bed beside him. And the only one whose grandmother woke to cuddle him through his fussy time at 5AM, took an awful hospital bathroom shower, dressed in her suit and headed in to her incredibly intense career.

We are blessed with an incomparable family. James could not have been born into a better group of people. Neither could ICU Dad and I, for that matter.

But we also needed our friends; the family you get to choose.

My dear, dear friend JJ organized my colleagues/friends at work and somehow managed to have meals delivered to our apartment. Weekly. For nearly four months. Also in her spare time flew down to take a night with J. I mean…

ICU Dad’s best man informed me he was coming to help — his wife and two year old generously loaned him to us so he could spend a week at J’s bedside in PICU. The man earned the nickname “honorary ICU Dad” after day 1; I’ve never seen anyone take to hospitals, and advocating for J, as easily as he did.

I’m part of a moms’ group for babies due in January 2014. These women supported James and me from all over the world, and also sent one of the most incredible care packages we’ve ever received. I still feel overwhelmed thinking of the night it arrived.

The friends who have been there for us, taking hospital nights, visiting, emailing and texting and calling even when we didn’t respond for weeks at a time (or ever). Just knowing you were there, even if we didn’t have the energy to reach out, kept us going. Reminded us that there was something on the other side waiting for us.

I haven’t sent a thank you card in seven months, which annoys me to no damn end. I love thank you cards. There is never an excuse for not sending one … or so I thought, until my kid was in the hospital for half a year.

So please, consider this my thank you card. Thank you family. Thank you friends. Thank you all of you beloved, wonderful people who have supported us since James was born, and who continue to support us every day. It’s true, you can’t move the mountain for us. But we sure as hell couldn’t move this mountain without you.